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My Journey So Far


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Thanks Julia, I had the line fitted last week and am due to start Folfirinox again this Friday. I finished my fourth radiotherapy treatment yesterday which seems to have done some good in that the pain is less prominent and I've been able to cut back on the Morphine. It's good to get some treatment started, it was put back a few weeks with the Cyberknife business. My latest Ca 19-9 was about 5500 which is more than four times the highest value last year. It will be interesting to see what happens, but in myself I still feel well and am managing to get a little bit of decorating done.

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  • MSH

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Glad to hear the pain is diminishing, that's great! Will you have a scan following the radiotherapy, or will it be after a few courses of ffnx? I can understand you feeling good to get back on treatment and hope it does the business again and gets those CA figures down.


Also pleased to hear that you *feel* well :)


Best regards,

Julia x

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  • 1 month later...

So the roller coaster goes on. My low point was probably after my first course of Folfirinox when the radiotherapy started to affect my swallowing. Every mouthful was painful, meals took five times as long to eat and I lost half a stone in a week. Additionally the back pain seemed to have plateaued.


I went for the second course and had to delay it for ten days because my neutrophils had dropped to 0.6, and more disappointing the CA 19-9 had climbed to 7486. I have now had two further courses at 80% strength. Yesterday I was able to lie on my side without undue discomfort the first time for months, and the pain generally has noticeably improved especially on a morning when it tended to be at its worst. When I had the bottle disconnected today I had my biggest boost, the CA 19-9 has dropped to 2992.


I have slight nausea but generally am tolerating the Folfirinox well so far. My worry was that the neuropathy would be aggravated as this persisted from my treatment last year, fortunately this hasn't happened at least as yet. If I get a good response to the chemo, then the Cyberknife treatment is back on the table. I have no symptoms from my abdomen and think the main problem at present is the metastatic lesion in my thoracic spine.


My best wishes to all affected by this dreadful disease.


Mark

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You look to have had a tough time od late Mark, but good to see you are coming through it with some positive indications to move forward with your treatment plan. Great that the old CA19-9 is moving in the right direction.


Take care


Steve

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  • 2 months later...

To my way of thinking there are two options for my treatment, chemotherapy with Folfirinox and stereotactic radiotherapy (Cyberknife). I had thought that having responded pretty well to six courses of Folfirinox I might be able to have the radiotherapy. This hope was scotched quite quickly when I saw my oncologist in London this week. The danger apparently is damage to the spinal cord in view of the fact that I received 20 Gy of radiation in September. Further treatment should be left for six months at least and preferably a year.


In a way I'm not too disappointed at this. I had my last course of Folfirinox on 8th December, and so have had a good Christmas and New Year off treatment. I also have a skiing holiday booked for the end of this month. The idea is to have a further four or five courses of chemo after this and before I have a lengthy holiday in North America in April/May. When I booked this trip it was by no means certain that I would be well enough to go. Happily my response to Folfirinox and the further proposed treatment makes me hopeful that I'll manage.


My present health is good. I have a constant reminder of the spinal mets because of a nagging discomfort around my left shoulder blade, but this is much better than it was and no longer requires painkillers. I am sleeping and eating well and have reasonable energy, though I'll be tested on this when I ski. I'm still a bit anaemic and there is a little lung damage after the radiation. The Ca 19-9 has fallen to 1017 so a fall of almost 6500.


It was the first anniversary of my Nanoknife procedure on the 8th January, and I wrote to Professor to update him on my progress. I suspect this has a lot to do with the disappearence on my biliary stent and as the development of jaundice was the first indication of this disease almost two years ago, the fact that I can manage without it can only be positive.


My best wishes to all in the coming year.


Mark

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Great update Mark! It is good to see that you continue to be so active despite the presence of the Gremlins. Enjoy your skiing and American trip.


Steve

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Thanks for the update Mark always good to hear how you are doing,enjoy your holidays Mark, that's what is all about, having a great time, good on yah but take care sandrax

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Nice to hear from you Mark and great news that you feel pretty good (and especially not needing pain killers).


Have a great holiday and keep onwards and upwards (in more ways than one!)


Best wishes


Cathy xxx

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  • 4 weeks later...

Just a quick update after receiving excellent news today. I had a very good skiing holiday in Niederau Austria, as opposed to my wife who fell on the first run, twisted her knee and was unable to ski for the rest of the holiday. She then picked up a bad cold to round things off. I only had one fall (skiing with neuropathy adds to the fun), which caused no problem at all from my back, which I'm sure wouldn't have been the case a few months ago. In fact I have been surprised at how much better my back, which is my only symptom, has continued to improve. I don't have pain now only a very mild discomfort when I think on. The other benefit of the break in treatment is that it has allowed my hair to grow back a bit.


So after managing to steer clear of Diane's cold I returned for further Folfirinox yesterday. I was expecting the CA19-9 to have increased a bit after the eight week break, but no it had fallen to 396. This is better than the equivalent response after my first lot of chemo, and the high then was about 1300 with the jaundice, not 7500. I tend to think of the 3rd of February as the start of my disease, so today is the two year anniversary. Things can hardly be said to be good, but they are a good deal better than back then.


I can only highly recommend Folfirinox to anyone able to take it.


Mark.

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Thanks for the update Mark, glad you had a good holiday, but sorry your wife didn't get to enjoy it as much. Good to hear you are feeling better with the treatment the Furry fox, is hard, but it works well for most. take care sandrax

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Fabulous news all round Mark. It must have been very gratifying to get good CA results.


Glad you enjoyed the skiing and how annoying for your wife! Hope you are enjoying your grandchild too. Here's to the next two years. KBO.


Julia x

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PCUK Nurse Jeni

Hi Mark,


Thanks for the positive update, apart from the skiing stories!


This is very positive indeed, and it was nice to see you at the summit as well.


2 years on ans you are still able to go on skiing holidays - well done indeed, and very happy for you to get such good news about the ca 19.9.


Lets hope the next round of chemo does equally as good a job, if not better even.


Take care,


Jeni.

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  • 1 month later...

Good Morning Mark, I hope you do not mind me asking, I know you go away on holidays and was wondering how you manage to get travel insurance. For us everytime we mention the "C" word and still being on treatment we get a "computer says No". Having tried numerous companies and answering all the questions you would prefer not to, more sorry the answer is NO.


I hope that things are continuing to go well for you, your posts are always so helpful to us all. Many thanks.......

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Hi Annette, I'm sorry I can't really be of any help. I haven't bothered with insurance since I was diagnosed. My wife was just saying the other day about someone at her work questioning the wisdom of going to North America without insurance. As she said at the time life is to be lived, and this is particularly true when there probably isn't a great deal it left.


We do have some advantages when travelling. I am really in good health apart from my pancreas and that should be quiescent for a few months after my response to chemo. Having a little medical knowledge is beneficial, for instance I was in Canada when I started to become jaundiced in 2013, and simply arranged to travel back before I became too yellow. I think that for most things there will be sufficient time to get back to the UK, and if there isn't, well it will probably never happen.

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Thanks Mark, I did wonder if like so many others you just take the risk. We have spoken about if something happens you just book a flight back home, although I guess it's just the peace of mind issue. As you say with your knowledge it helps. Wishing you a great holiday you deserve it and once again thanks for all the help and support you provide to us all on here. Sometimes it's very hard getting caught up in the politics of dealing with this terrible disease. Kind Regards Annette

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  • 2 months later...

When I first saw my oncologist the course of treatment was pretty clear. A recent study had shown major survival benefits with Folfirinox over the then standard treatment of Gemcitabine, 11.1 months as opposed to 6.8months. Because the study had used a course of twelve treatments at two weekly cycles, that tended to be the model used. There might have to be modifications because of side-effects or intolerance, but essentially that was the aim. I still remember how disappointed I felt when I saw my oncogist after finishing this course of treatment and the subsequent MDT meeting. The message seemed to be wait until the symptoms return and then we'll try Gemcitabine. As I remarked to my wife driving home, the whole tone seemed nihilistic.


I subsequently went on to have treatment with the Nanoknife to the pancreas, and tried to persuade two private oncologists to treat my bony metastasis with the Cyberknife. This wasn't done after a PET scan in April 2014 found no activity. It was a lie, as within weeks I began to get symptoms and after being indolent for more than a year it quickly spread to three surrounding bones and the nerve root. I had conventional radiotherapy and had had a further six cycles of Folfirinox by December of last year. I then had a break of almost two months when I re-explored the possibility of Cyberknife treatment and went skiing. I had hoped to have a further four cycles before I my North American trip, but only managed three as my neutrophils tend to drop too low.


We have just returned from two weeks in Canada and almost three in California. It was generally a walking holiday and we had an amazing time. The only slight disappointment was that we had to alter our plans to hike in Yosemite after they closed the road because of snow. We had to make do with the Sequoia National Forest instead! Apart from a broken tooth which fortunately didn't cause any problems my health was excellent. There was a time quite early into the holiday when the pain from my back seemed to be returning, but it was only my mind playing tricks as it is sometimes wont to do.


I have just seen my oncologist and this time the course of treatment is far from clear. We have moved into uncharted territory where we have to choose what seems the best option. She suggested dropping one of the drugs, but agreed with my idea of resuming full strength treatment but at three weekly intervals. I had been sure that as my last treatment was on the 9th March the effects of the chemo would have waned and my CA19-9 would show an increase. Because of some reorganisation this came back later than usual but I was delighted to find it had fallen from 318 in March to 201. Despite the gaps in my treatment I seem to be responding at least as well as the first time round. Additionally I am much less effected by side effects and have a full head of hair. With many drugs it takes time and experience to find the best way to use them, with Folfirinox I think we are still learning.


I have a review appointment in about twelve weeks time. I had planned on using the biomarker to guide us with respect to treatment. However, we have booked to return to Palm Desert (a type of timeshare) next April. With that in mind I think I might be best continuing with Folfirinox until next Spring. I know there are huge assumptions in there, and if I get there it will take me into my fourth year with this disease. But having lived with this for over two years now, and feeling as well as I do, my horizens have lifted a bit. Also it is good to have things to look forward to.


Let us be positive.


Mark.

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Fabulous news Mark. So good to hear you are still getting the most out of life.


Your path is always a stark reminder to me of how this disease affects people in very different ways. Ray got ill about the same time as you and also had bony mets to his spine. Your paths could not have been more different.


I wish you continued good health and continuing positive outcomes with your treatment. So encouraging to hear the good news.


Keep up us to date.


Julia x

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I agree about uncharted territory but this is also one of the reasons why I hoped for the medical innovations bill to be passed. We were told when asking about abraxane "It's only been trialled for first treatment so we can't use that". I do think that with PC and, as you say, folfirinox being fairly new, that 'try it and see' is crucial. I do think that sometimes they are stumped as to treatment plans when you thwart their expectation that you'd be 'gone' by now. Also, I have come across many survivors in America (I must have read every blog, post and report, in their thousands, in those first few months) where they have been on chemo for 2 or more years, way after all symptoms of the disease have gone as far as the scans are concerned, simply because their docs believe it will come back if they stop - and looks like they are right. Our treatment plans are too rigid in this country. Incidentally the few people who have survived in this country often have had private treatment where their oncologists have thrown something extra in the mix. We don't have that option.

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Hi Mark


Keep posting...! It's always great to hear from you and that you are doing so well. I gives everyone hope.. and great that you have planned ahead for next year!


Hope is so important.


Kindest regards


Cathy xxx

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Mark ,

It's the only way to go ! keep fighting this damn & blasted PC with everything and anything that's at your availability that keeps you well enough to carry on seeing the wonderful world that is out there keep planning ahead and Enjoy !!


EmmaR x

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